She was a quiet girl, small-framed, light brown hair, with big blue eyes that burst like over ripened blue berries. At times, she was prone to mischief, although she kept to herself a lot, drew pictures of animals or anything animated and full of color. She was quite the artist for a 3-year old, loved animals, and from first introductions, you would think was a normal child. Once you got to know her, though, you quickly realized there was something different about her.
During the preschool years, one of my daughter’s teachers mentioned that she thought she might be Autistic. She elaborated and described her observations, indicating that she didn’t socialize with other kids, didn’t like hugs, and couldn’t be within 2 feet of anyone in the classroom. During story time, there was a spot blocked off especially for her, where no one was allowed within her circle of comfort. This was the first major instance of an inner rebellion that would play a key part throughout Amber’s life
In the first grade, the situation became more complicated. Her teacher had a merit system that consisted of pulling green, yellow, and red cards to reflect a child’s behavior, with green being the best and red the worst. Very often, my daughter was on red. Another rewards system involved the earning of fake money to purchase toy trinkets. This motivation only went so far. As a last resort, her teacher came up with the idea of awarding her a hall pass for her to go and see the fish in the library. This helped to some degree, but wasn’t enough. There was a mention of having her take prescription medicine, but this totally horrified me.
That spring, I was very pregnant with my second child and was informed by the school that my daughter’s behavior was so intolerable that she would not be allowed to go the second half of the day. Our family was very much in a state of crisis. I was a full-time employee, primary insurance holder for the family, and was going to have a baby. Our family desperately needed for me to work and to maintain health insurance, and somehow, arrangements had to be made to have my daughter picked up from school and have someone watch her, until I got off work. I was so afraid that I would have to quit my job and that I wouldn’t have health insurance to pay for the cost of the delivery. Not only that, I was worried the stress of it all would make me go into premature labor. Luckily, my husband had a friend, whose wife was a stay-at-home mom, and she came to our rescue.
After my son was born, I had 3 months off during the summer and stayed at home with him and my daughter. For the first time, I experienced full throttle what the teachers were talking about. She was in perpetual motion and constantly tormenting me or our two cats. She thrived on negative attention. The only type of rewards system that seemed to work with her was bribes with toys or candy, neither of which I was particularly fond of.
After having endured the roller-coaster ride of my daughter’s negative and relentless antics for about 2 weeks, I had decided that prescription medicine might not be such a bad idea. While certainly not my first choice of remedy, I was willing to try. So, at the age of 7, my daughter’s medicine usage career began.
Now 17, she has gone through the gambit of medications, some prescribed for anxiety, obsessive-compulsiveness, mood swings, and other not-so-flattering diagnoses. Her doctor has used the analogy that treating symptoms is like that of treating an old car. You fix one problem, and others may surface. Then, they all must be treated.
So, is the medicine worth it? Sadly, without it, she would not have been able to get as far as she’s gotten. Even with medicine, she still requires a lot of one-on-one coaching from special education teachers or she won’t learn.
After about 6 years of her being on medicine, she was finally given the label of Aspergers, which basically combines all of her diagnoses into one. The most important component of this label though was how it defined her inability to socialize with other kids, give hugs, understand human emotion, and her being chronically inflexible.
The irony of all this is that in so many ways I see my daughter as my antithesis. I see a girl, who has a life far more difficult than what I’ve ever had to go through. She is awkward socially, physically, and intellectually. Her hardship is my challenge, my challenge her hardship. Together, we have faced surmounting obstacles and have a lot more to face. Without family, doctors, the school, and other community supports, I don’t know where we would be. One thing is for sure, if I could give her the world, I would, but it’s not that easy.
The following was the second entry I had previously posted called
"The First Breakdown"
First grade was not a fun time for Amber or our family. The summer prior to first grade, she had gone in for psychiatric testing, so the school could determine what exact symptoms she suffered from. Also, this diagnosis would determine whether she could be enrolled in Special Education classes. Sure enough, she was definitely eligible for the classes. At that time, she was diagnosed with Attention Deficit Disorder, Oppositional Defiancy Disorder, and Bipolar Disorder. I learned so much about labels that summer. It was definitely not the pleasant learning experience. Also, I was informed that she was eligible for services and would be attending a new school. This was a relief to me, since the half-day only school attendance was somewhat of a hardship to our family, although we managed to survive. The real kicker, though, was I was informed that she would be attending school in a different town that I had never heard of, 30 minutes away. Not only that, but there wasn't bus transportation going to this school. Our family had survived the first crisis of the half-day school, only to be given this new trauma. Fortunately, we were misinformed about the lack of transportation. Still, the school was in a different city, 30 minutes away, which meant having to get up earlier to be ready for the bus. It wasn't a very happy introduction of starting public school with the new baby and all.
The worst part about first grade is that Amber started fixating on things and exhibiting stranger and stranger behavior. She had started taking Adderal, which we later learned is the worst possible medication to give her. Stimulants magnify psychotic behavior in her. At the time, she was one hyperactive kid. She was always standing on her head at home and performing non-stop somersaults up and down the hallway. As if that behavior wasn't odd enough, she became fixated about blonde hair being ideal. So, what she would do is go look at herself in the mirror and pull out the unwanted hairs. The problem is, Amber doesn't have blonde hair. Her hair is brown, so she would pull any hair out. She would do it, when she'd think no one was watching. She also pulled out her eyelashes. Nothing would stop her from doing this. There was no rationalizing with her. The teachers at school started having her wear gloves to try and deter this behavior. It helped to some degree, but the behavior got out of control. She actually managed to pick bald patches in her hair. It was horrifying. Even seeing herself with baldness and no eyelashes was no deterrent for her to stop this behavior. Fortunately, head scarfs were fashionable that year, so we bought her some of those. They also served as somewhat of a deterrent to keep her from ripping her hair out. When she couldn't pick at her hair though, she'd pick at her skin. The problems never seemed to go away. Medicine sure didn't seem to help either.
At daycare, there were other problems. She did the repetitive headstands and somersaults there too and was just an all-around weird child. She would talk about eating bugs and stuff. The caregivers kept expressing concerns about her, until one day, my husband and I scheduled an emergency appointment with her doctor and she was admitted into the mental hospital. We had no idea what else to do and really didn't feel we had much other choice.
Taking her to the hospital was a very scary thing. In order to have her admitted, my husband and I had to be interviewed by hospital staff. They ask you very personal questions about how you discipline your child, what life is like at home, what is her entire history all the way back to her delivery, etc. You feel like you are being put on trial and start second guessing whether you've done anything wrong that could cause such behavior, whether they are going to fault you for something, etc.
She was successfully admitted, and I believe was there for about 4 weeks. Whilst she was there, her doctor saw her daily and prescribed different medications. She would meet with the doctor and with a counselor. She also had a very structured day, where she would have the regular meals, have game time, where they would work on crafts, play in the gym, swim, watch TV or whatever. Plus, she had to be responsible for picking up after herself, making her bed, etc., which I saw as a positive. The staff was very friendly and helpful. In fact, Amber, at one point, told me she didn't want to leave because she liked the pool so much. She liked the games and the food too.
On a nightly basis, we would go and visit with her and call and tell her “good night”. It was sad. What a horrible first-time-away-from-home experience, but it didn't seem to bother her one bit. One positive thing that turned into a negative was this one medicine she was prescribed, Zyprexa. She was such a skinny Minnie, but this medicine changed all of that. It stabilized her mentally but also gave her an insatiable appetite. She ate constantly and never felt full. She put on 20 pounds in just a couple of weeks and started outgrowing her clothes in leaps and bounds.
During the week, I would go to two 8 o’clock appointments before work and meet with a panelist of experts, including the doctor, counselor, and other representatives. We would discuss our goals for Amber, what goals were being met and needed to be met, in order for her to be approved for release. We would also discuss things such as what insurance approves and disapproves of. If the doctor couldn’t make a good, solid case to the insurance that Amber required care, they would not authorize or pay for her hospital stay. So Amber’s stay overall probably cost in the ball park of $20,000, paid for by the insurance. It was not cheap, by any means, and after Amber’s release, my husband and I, both, had to fight with the insurance to make sure bills were paid, etc. My appointments at the hospital, fortunately, were covered by FMLA, although I’d often work through lunch and beyond my normal work hours to minimize my usage of it.
Once Amber was released from the hospital, life at home and school was a lot more stable. We started her at a different daycare, where there were fewer kids and more supervision, at the recommendation of her bus driver, who was a sweet, sweet lady. The new daycare was so much better for her. The daycare owner seemed to be more engaged with her and understood her special needs, whereas the other daycare lacked the personal touch and the one-on-one care that Amber so requires. Amber had successfully been stabilized.
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